December 28, 2011 4:00 p.m.
I think I’m physically weaker now than earlier in 2011. Mostly, because I haven’t been to physical therapy in a while. Did you catch the denial there? It’s sneaky. Thank goodness due to Medicare, that will change shortly! I’ll soon be active again.
I took a shower around 4 p.m. today. The time of day I usually bail out of any activity, but I didn’t want another day to pass “showerless”! I used my shower bench as usual, but this time after my shower my legs just wouldn’t step forward. They were stiff like logs or in medical terms, very spastic. My husband had to help me out of the tub and dry me off. I think I’ve mentioned this before, but this time was different. I couldn’t move my legs at all! He had to literally put me in the bed and tuck me in. How can I ever thank him enough?
How did I feel? Grateful. I wasn’t even tired. Legs just wouldn’t move. Strange feeling. Oddly enough, I’m lying in the bed now and calm. I’m typing this blog because I’m not surprised. After all, when this happened before within hours I was up and moving again… albeit slowly.
I’m betting on this being transient because that’s the way my M.S. works even though I have a more progressive case. I still have ups and downs similar to the common relapsing/remitting form of Multiple Sclerosis along with my secondary-progressive Multiple Sclerosis symptoms.
Honestly though, I am silently devastated, but I’m viewing this as temporary, a slight diversion. As a matter of fact if I viewed more things as temporary, maybe I’d come out on top more often! Another reason I’m not losing my composure is due to the support I’ve received from my faithful readers. I’ve been blogging for only two years but you’ve given me a lifetime of support, encouragement, perspective, and opportunity. For that I thank you and wish you a Happy New Year of pleasing new normals!
As for me, I’m still in the bed. It’s 5:36 p.m. I’m motionless waist down, patiently waiting for my legs to get the message. Stay tuned.
[…] things that I had been able to do for a while, I could no longer do! Plus, you remember that entire post about me transiently losing the use of my legs? Well it is still happening. At times I’ve […]
Hello! Just want to say thank you for this interesting article! =) Peace, Joy.
Clantteda,
Thanks for the read! I tend to post new articles on Tuesdays! So come back and see me!
NIcole,
Question: How did you get your picture with so many famous people??? Impressive! Keep spreading the word about MS! XO
Cathy,
The wheelchair helps a lot!
Seriously, sorry if I am not up to speed on ALL that you do (which is a lot!) but do these events you are at with these “famous” people – are these MS events or just your everyday wonderful life? PS Sorry about what you recently when through during your diversion. MS can be a real pain……this is my 26th diagnosed year of it and I know. I hope you get better…and better….and better! PSS I love reading your blog.
All of those pics were in New Orleans. It seems that there is always somebody “famous” just walking around in New Orleans. The city is so small that most people go out in the same areas (French Quarter, Bourbon Street, CBD,…). I think because I am in a wheelchair getting a picture is very easy. Some of them have even asked if they could get a pic with me?
How great!!! Of course, you were, and are, the “star”!!!
[…] things that I had been able to do for a while, I could no longer do! Plus, you remember that entire post about me transiently losing the use of my legs? Well it is still happening. At times I’ve […]
Hi Nicole, so glad I found your blog. You are such an inspiration. I have been DX since 2002 with rrms although I know it has progressed i wont claim it yet. I just wanted to comment on loving your tub/shower. I made the mistake years ago getting the jacuzzi tub shower, it is so deep and hard to get in to. I know I will eventually have it changed because I know I am taking a chance getting in and out of the tub everyday. I thank God nothing has happened yet. I will continue to follow you, I will bestarting G Feb 6th.
Angela, Good for you. Be sure and let me know the outcome of G for you. And yes I love my shower!
HEY NICOLE…Merry Christmas. I know how you feel abt the shower, it is MY nemisis. As of abt 1 month ago, I could no longer shower alone as I was. I fell while my husband was at work & had to wait lying on the shower floor while I waited for him, about an hour! Luckily I wasn’t hurt & I always took the cordless phone in with me. Since we have a huge walkin shower we are looking at a wheeled shower/transport/comode combination just for shower use. I do hope this does the trick since walking into the shower even with his assistance is quite the work-out for me & doing so at 4PM is also way past my fun peg meter time. Have you tried bathing in the morning? I always have much more energy (if you want to call it that) in the morning. I also suffer with lack of movement on my entire left side with my right quickly catching up to the left. I will be going on Gilenya in abt 1-2 months after having the necessary tests performed. How is it going for you? I also have SPMS, have been on ALL the drugs with no improvement, so naturally I am skeptical of this. We’ll see. take care.
Kim,
I take a stimulant now to prepare me! Man, I forget just how dangerous a simple shower can be.
Hello Nicole. I just found your blogs a few weeks ago. It’s not just that you write about feelings and issues, it’s the way you write them. You are a good writer. I too am SP and have relapses like you. The holidays did me, I did too much, not the holiday!! I have not fully recovered this time. I have had MS for 37 years. I consider myself lucky to be as good as I am. Please keep blogging!!
Claire.
I’m so glad you found me!
Nicole,
Sometimes with MS it is like our bodies hang on of those signs that say “Be Back At (with the little red clock hands).”
I too have “secondary-progressive” MS, although my wife says it is “primary-progressive,” But, whether it is primary, secondary or thirdary–all that matters is that mobility is difficult. I don’t live by “labels.” Just remember to move what you can–when you can–and never stop!
Enjoy your words. Keep it up.
All the best,
My Odd Sock
My Odd Sock,
So very true!
Nicole, Happy New Year! I always look forward to reading your blogs. I think it helps a lot of us to know that we’re not alone in how we feel on a particular day fighting this disease.
Debby,
Thanks a lot! It helps me too!
love your posts Nicole, especially since i just had a minor setback, and could not even tell my roomie to come help, cause she thinks i am just unwilling. yes i cut my own nose off on a regular basis. scared me bad. i feel ya out there…but do not be alarmed, i only feel youur support. your friend, leslie joan in flippin’ cold ass idaho.
Leslie,
Really happy you like the posts! Sorry you had a setback or slight diversion of your own. Hang in there.
I’m so happy that your legs came back! Starting to get cold here now which is a unique issue for me – MS usually acts up in the heat, but I have another illness that hates the cold. Ahh life :). I hope you have a happy all year.
Maxine,
Happy New Year to you as well! Sounds like you’re in a a sticky position with the weather!
Good to read your legs came back and you were off to the gym.
The body not doing anything when you want it to is scary and feel helpless. I admire that you were calm and had the mind set to wait it out.
Nancy,
Coping mechanisms I had to learn!
I like reading about your new normal. I have MS and it’s my normal too. Progressing rapidly right now. But, like you I consider it temporary. I heard a statement a long time ago. “An interesting wrinkle”. It applys to me so much. dxed in 1996.
Terry,
Thanks for reading. I wish you the best! And pleasing new normals!
Nicole, I hope you and your legs woke up energetic today. It’s so nice for me to have a community of people who do understand such a non-understandable disease.
Mary Ellen,
THEY DID! In fact I’m headed to the gym right now!.No treadmills though.
Hi Nicole,
You are handling this so well! You are a brave person. I had a similar incident a couple of weeks ago, and it is pretty scary. I like you, did not panic, took it in stride and waited it out. My legs are back, not 100% but enough for me to rejoice. Stay positive, being optimistic is a great tool to aid healing.
Karen, That’s funny I don’t feel brave, more like stubborn. I don’t like that I consider MS as the enemy, because after all it is a part of me! My legs are back too!
I can totally relate to your story at this very minute. Thank you for sharing it – I feel less alone in what I am going through. I love the MS community. Thanks, Nicole.
Cathy,
Remember you can always email me too! Thanks for reading!
Thanks, NIcole. You really do have a wonderful site and I appreciate the efforts. As I experience my latest exacerbation it feels so warm and wonderful to have other people with MS give me strength and courage. Thanks!
Cathy,
Thanks again. I”m so glad we found this web or cyber community. It sure helps.
When I keep finding the individual bumps and ditches of MS in my road through the holidays, I always try to console myself saying, “Whether this symptom goes away or is here to stay, I will always have how I deal with it. Am I strong enough, smart enough, adaptable enough, or most importantly resilient enough to move forward again?”
Where I often fail is in the decison making process to take time to rest category. I will say I have taken great strength from the guy at my MS for Men group meeting in Annapolis (5 years ago there existed a group for all of 4 meetings). He told me, “When a symptom makes you upset, it owns you. The moment you can poke fun at it and laugh at it and yourself, then is the moment you start to own it.”
So the up and about part of your day may be at an end. So what? You’re clean. I bet your husband will feed you if you ask nicely. Personally, I think too much is made of breakfast in bed. I mean for those I would have to wake up. Now dinner in bed…that’s a horse of a different color. I think that would be nice, to have food before sleep instead of interrupting it. See it’s all about opportunity.
Geof,
I am constantly looking for the moment I can poke fun of MS symptoms. I usually find them in the bathroom. Hope thats not TMI. By the way, legs cleared returned to baseline by the next day!
Funny, I was talking with one of our kid’s baby sitters about what it takes to embarass me or make me uncomfortable medically. I told her about how for the first year when ever I leaned over and looked down, I would feel a vibration in my crotch. I said normally this would make me do lunges looking at my feet for fun, but as it was I felt this mostly when looking down to pick up after my dogs. Why oh why do I have to associate this sensation with picking up dog poo? Then there is the reason to keep a spare pair of underwear in the car. I mean after giving presenations to hundreds or hosting a meeting for 12 coworkers with tracks in the undies, what could possibly make me uncomfortably embarassed? There, now have I one upped the TMI threshold to the point where you no longer worry about it (failing that, I always hope those examples bring the same smiles to others as they do to me)?
Geof,
I can’t stop laughing!!!
Nicole this exact same thing has happened to me TWICE. Like you I’m SP but also like you I still get relapses. On these two occasions, I went to bed as per new normal and woke up totally spastic, could NOT put one leg in front of the other. Usually it’s that the feet don’t want to pick up off the floor, these times it was simply legs would NOT move forward. No rhyme or reason, like everything else with this obnoxious disease, it just happened. And as I said it happened twice, within the space of three weeks. This was about six months ago and we’ve not had a repeat. It took me 24 hours to recover but at least I recovered. When something like this happens you fear its a permanent turn for the worse. I would love to be able to understand what exactly is going on in the body to trigger this. Anyway here’s to a good year of new normals.
Atheana,
I was back to baseline by the next day. I didn’t know you were SP. You’ve gotta email me. I don’t speak to anyone who has SP so it would be nice to meet you. Happy New Years!